More than 25 Years with a Brain Tumor and Still Forging a Hopeful Trail

By Susan Johnson

When our son Chris was seven, he and my husband Jeff set a goal of hiking the entire 2,190-mile Appalachian Trail. It took them 17 years – one segment of the trail at a time – and celebrating their progress helped me along my own journey. They finished, but I’m still traveling my path – one treatment at a time.

Susan Johnson and her husband, Jeff.
Susan Johnson and her husband, Jeff.

In 1992, I was diagnosed with an oligodendroglioma, a rare, slow-growing tumor that starts in the supportive, or glial, tissue of the brain. I’ve been through several different chemotherapy regimens, radiation, and most recently, two surgeries at Dana-Farber/Brigham and Women’s Cancer Center (DF/BWCC).

The tumor has always come back, but I continue to be as positive – and active – as possible. The more time passes, the more strides are being made in this disease.

Chris and his younger sister Holly grew up watching me fight cancer, although at first, my tumor didn’t show itself. One day in 1986, I was at home paying bills when I felt a short period of dissociation which, if it had lasted long enough, would have caused me to fall off my chair. This quickly led to temporary paralysis on my right side. Jeff, an emergency department physician then in his residency training, took me to the hospital – where I underwent a head CT scan, followed later by a brain MRI. The results indicated that I had experienced a stroke. I was 27.

Six years later, when Chris was three and Holly was not quite six months old, the same symptoms cropped up again: temporary right arm and leg paralysis, along with loss of my peripheral vision in my right eye. One night, I got up to nurse Holly and almost collapsed to my right while walking over to her. After going back to sleep, I started thrashing around with what Jeff witnessed as a grand mal seizure. He knew not to wake me and just kept me safe; I didn’t remember anything in the morning.

Back to the hospital we went for another CT scan and MRI. When doctors compared these to my tests from 1986, they realized that my earlier symptoms had been caused by a slow-growing tumor and not a stroke. It was not considered operable, and 12 months of chemotherapy got things under control. For nine years I was monitored closely and I was doing well – playing tennis, working out, and hiking.

Then, in 2003, the symptoms came back once more. I started on chemotherapy again, but could only tolerate six cycles before my blood counts went way down. My doctor hoped six would be enough, but after two relatively good years things got bad again. At this point my doctor recommended I see Patrick Wen, MD, at Dana-Farber.

Surgery was still not an option, Dr. Wen said, so he advised starting a six-week course of stereotactic radiation treatments at DF/BWCC in September 2004. There was an impressive decrease in tumor size, and nine more years of monitoring and enjoying life – watching our kids grow up, graduate high school, and head to college. I am now under the care of David Reardon, MD, clinical director of Dana-Farber’s Center for Neuro-Oncology. and both are now involved with my care. My treatment team, including Dr. Wen, Dr. Reardon, and my wonderful nurses, Sandra French Ruland, RN, and Jennifer Stefanik, NP, make me feel loved and safe.

I always felt like the cancer was going to come back. It did, but by 2014 a surgical technique had been developed that enabled surgeon Ian Dunn, MD, to reach the tumor without compromising the right side of my body. Six weeks after surgery, I started another year of chemotherapy. In October 2016, I had more surgery. The second time was much easier; I was out of the hospital in less than two days.

Susan Johnson, her husband, Jeff, and her children, Holly and Chris.
Susan Johnson, her husband, Jeff, and her children, Holly and Chris.

Now I’m on a clinical trial headed by Dr. Wen as principal investigator that doesn’t even require me to go in for infusions. I take one pill every day and check in with my Dana-Farber team once a month. My tumor has a genetic mutation, and the trial is designed to stop the bad cells from dividing and growing. There are no side effects, and I’m back on the tennis court – happy and enjoying life.

Dr. Reardon says things appear very stable, and that’s a word I like. The tumor is never going away, I know, but we all have trails to follow. Chris likes to say, “Mom, you got this,” and I agree.

Learn more about treatment for brain tumors from the Center for Neuro-Oncology at Dana-Farber Cancer Institute.

1 thought on “More than 25 Years with a Brain Tumor and Still Forging a Hopeful Trail”

  1. Thanks for this info! It gives me hope as I live with my tumor (olio II with deletions) which is too defuse for surgery. I too was referred to your team in hopes of seeing the best of the best by the PA on my team here in Rochester New York. Finishing out my chemo then will try to set up some appointments.

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